In Part One of this series, I discussed my mother’s recent diagnosis with Lewy body dementia (LBD) and her symptoms which are similar to Alzheimer’s and Parkinson’s disease. In Part Two, I shared what I’ve learned about dementia along with our experience getting a proper diagnosis and all the benefits of doing so.
For the final article on my three-part series on caring for a parent with dementia, I’m going to focus on the needs of a caregiver.
In case you haven’t read my previous blogs, although I’ve been helping to care for my mother for the last couple of years, her symptoms have become worse and as a result, I have become a full-time caregiver. As I enter this new phase in my life, I’ve already experienced a wide range of emotions.
Since people with LBD have good days and bad days, I often get my hopes up on the days when my Mom seems “normal.” Then, inevitably those hopes are dashed when Mom begins hallucinating and thinks she sees a bear in the laundry room or her other symptoms manifest themselves. Then the heartbreak begins again.
On some days, I feel overwhelmed by Mom’s needs that range from pulling her up out of chairs, helping her dress, supervising showers, household chores, taking her to appointments, and distracting her when she’s having one of her vivid hallucinations.
Of course, I feel guilty whenever I become frustrated and lose my patience with my Mom over things that are no longer under her control. Sometimes I’m jealous of my siblings, who all help in their own way, but have so much more freedom than me.
And I mourn for the mother I used to know and love.
Not all my emotions are negative, however. I feel grateful that I work at home and can care for my mother to repay her for all the kindness and care she’s given me over the years. I’m happy that I can make this phase of her life a little easier. Thank goodness, we both have a sense of humor and we can laugh about some of the absurd situations we find ourselves in due to this sometimes bizarre disease.
This experience is challenging and rewarding at the same time. So what can we caregivers do while we’re on this crazy roller coaster ride of emotions?
I’m still learning as I go along, but here are a few tips I’ve garnered from my own experience so far, extensive research, the medical profession, and friends who have experience as caretakers:
No matter what type of dementia your parent is suffering from, knowledge is power. Writing these blogs on caregiving has not only helped me express and release my emotions but the research has also educated me about LBD.
Learn everything you can from your doctors, books, websites, and support groups – including information about the disease itself, how to communicate with someone who is suffering with this disease, and ways to reduce the stress and frustration that is part of being a caregiver. You may also need to help educate other family members.
If you have a parent with LBD like me, there are some great books listed on Lewy Body Dementia Association’s website you may want to check out.
Take Care of Yourself
The same rule applies for caregivers as parents on an airplane. “Put your own oxygen mask on first.”
Several friends and family members who have gone through this experience have strongly advised me to care of my physical, spiritual, and emotional needs and recognize my limitations.
As a caregiver, you play a vital role in the life of your parent, so make sure you’re eating healthy, getting enough sleep, exercising, and making some personal time for yourself. All caregivers need a time-out from their responsibilities for their own well-being and to prevent burnout and depression. Look for signs that you need a break such as feeling stressed and irritable.
Learn to accept help when it’s offered and ask family and friends for assistance when needed. In my case, I am fortunate to have a support team behind me. My dear husband has been invaluable. I am one of four siblings, all of whom live close by. My brother lives in a casita on the property and works during the day, but is able to help out during the evenings and on weekends. One of my sisters takes my mother on outings every Thursday. On days when I’m overwhelmed or have an appointment, my other sister is on call. My two sons and daughter-in-laws as well as people in my congregation have also volunteered to assist as needed.
Even so, I realize that in the future, professional help may become necessary.
Experts as well as doctors stress the importance of finding support and local resources in your community BEFORE you need them.
If your parent has LBD, you might want to start by checking out The Lewy Body Dementia Association’s website. Or you can call the LBD Caregiver Link (800-539-9767) or contact the online community of caregivers on the LBD Forum.
Caregivers can also turn to a California Caregiver Resource Center for assistance. In other states, resources can be found through local and state offices on aging and health such as your Area Agency on Aging or the Alzheimer’s Association in your area.
In addition to practicing these tips, I’m also learning to take one day at a time and as a religious person, I’m relying heavily on God to get me through this difficult time. In addition, I try and focus on meaningful moments I can still have with my Mom.
These are my thoughts and from time to time, I’ll share more information as I travel this journey. If you’re a caretaker, I’d love to hear some of your tips, thoughts, and feelings in the comments below.